Academic journal article Journal of Nursing Measurement

Development and Initial Validation of a Parkinson's Disease Caregiver Strain Risk Screen

Academic journal article Journal of Nursing Measurement

Development and Initial Validation of a Parkinson's Disease Caregiver Strain Risk Screen

Article excerpt

Background and Purpose: Family caregivers face potential strain in caring for persons with Parkinson's disease because of the unpredictability of symptom presentation. The Caregiver Strain Risk Screen (CSRS) was developed and tested for initial validation. Methods: Instrument item development was guided by focus-group and interview data and a theoretical conceptualization of caregiver strain risk in caregivers of persons with Parkinson's disease. Caregivers of persons with Parkinson's disease (N = 217) provided data. Results: Principal components analysis supported a 28-item instrument with 4 factors: self-preservation, nursing home consideration, coping through spirituality, and coping through formal support. Conclusion: The 28-item CSRS demonstrated acceptable validity and reliability in measuring the construct. Research using a new sample is underway to further psychometrically test and validate the CSRS through confirmatory factor analysis.

Keywords: informal caregiver; Parkinson's disease; instrument development; caregiver strain

Parkinson's disease is a degenerative neurological condition that affects more than 1 million people in the United States, with 60,000 new cases diagnosed each year (National Parkinson Foundation, 2013b). Parkinson's disease is most common among older adults (60 years and older). The number of older adults in the U.S. population is expected to increase to 88.5 million in 2050, more than doubling from 38.7 million in 2008 (Bernstein & Edwards, 2008; Shagam, 2008), so the number of persons diagnosed with Parkinson's disease is expected to increase as well.

Caring for persons with complex chronic conditions such as Parkinson's disease can have negative impacts on informal caregivers (usually family members). This responsibility can affect caregivers' financial stability; retirement security; and physical, social, and emotional health (Feinberg, Reinhard, Houser, & Choula, 2011). It is vital, therefore, to support and protect such caregivers. Often, their caregiving efforts result in helping persons, such as those with Parkinson's disease, to live at home as long as possible (Abendroth, Lutz, & Young, 2012; Feinberg et al., 2011).

One way to assess the well-being of caregivers of persons with Parkinson's disease is to measure their risk for strain. Within this context, strain can be conceptualized as a state of sustained distress affecting the physical, emotional, intellectual, spiritual, and social well-being of caregivers of persons with Parkinson's disease (Abendroth et al., 2012). Strain was an important construct represented in a Parkinson's disease caregiving model developed from interviews of caregivers of persons with Parkinson's disease (Abendroth et al., 2012). The interview data, which led to the development of the model (see Figure 1), suggested that heightened risk for caregiver strain results from increased caregiving load and increased severity of Parkinson's disease symptoms over time (Abendroth et al., 2012). Subsequent to model development, a new quantitative instrument, the Caregiver Strain Risk Screen (CSRS), has been designed to measure the risk for strain viewed within the context of the Parkinson's disease caregiving model. The purpose of this article is to describe the development and testing of the CSRS.

BACKGROUND AND CONCEPTUAL FRAMEWORK

Seventy-four percent of the 65 million unpaid primary caregivers in the United States provide assistance to adults with various conditions such as Alzheimer's disease and Parkinson's disease (National Alliance for Caregiving, 2009). In 2009, the economic value of family caregivers was estimated at $450 billion (Feinberg et al., 2011). Such caregivers, whose average age is 50 years, are usually wives or adult daughters of the care recipient (Houser, Gibson, & Redfoot, 2010; National Alliance for Caregiving, 2009).

Redfoot and Houser (2010), in a 10-year study, noted that family caregiving could have been a contributing factor to the declining use of long-term care. …

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